Other Mothers Dealing with Child W/ Torticollis and Plagiocephaly

Hi A.,
My son was born with Torticollis. I never took him to physical therapy. I was told to stretch his neck every time I changed his diaper. I would hold his shoulder and push his head in the opposite direction. He hated it and screamed every time, but it had to be done. He had an indentation in his jaw from his shoulder, I did this faithfully, and by the time he could sit up, he was barely leaning to the one side. By the time he was 1, his head was totally straight. He is 12 1/2 now, and you would never know he had Torticollis. His jaw bone straighted out and he's normal.
Good Luck and things will straighten up, just be deligent in the stretching of his neck.
S.

Hi, First, I'd like to wish you good luck and hang in there. Dealing with any kind of physical challenge can be hard on the parents. I have only one piece of advice: stick with the PT. It can only help.

I don't know if you still want advice but here it is my son had torticolis and plagio we started him on pt at 2 1/2 months and did all the stretching he hated it and the reposisitioning that wasn't to bad. What made the biggest difference for him was that our pt told us to give him lots and lots of tummy time (if he dosn't like it put a pillow or rolled up towel under his armpits) she also said to let him fall asleep on the floor with his head turned to the nonflat side so that there is weight on that side she said the floor helps because it is a hard surface. Since doing this our little guy started rolling over and over and over at 3 months old. He is now 4 months old and has no signs of the tort or plagio. The pt did tell us that each time he goes through a growth spurt he could relapse. Hope this helps best of luck

Hiya. We went through this with our three year old. He had a Starband. Not sure if you're in the Eugene area but if you are, I highly recommend Barnhardt Orthotics and Prosthetics. They were fabulous to work with and really great with our son. I can't stress doing PT enough. This is not something that will "just go away" if ignore it or just work on it a little bit. My son was diagnosed a little late and the Starband was not as effective as it would have been if we'd been able to get him into one when he was your sons age. I seriously regret listening to the doctors who told me that the flat spot would round out on it's own. Running around town with your kid in a helmet is kind of weird at first but after a while you don't even think about it anymore. And the end result - a nice round head - is totally worth it! Good luck!

Dear A.,
My grandson wore a helmet for 16 weeks. My daughter noticed the plagio at 4 months (he had torticollis too) but the pediatrician wasn't concerned. By 9 months it was much more obvious. She struggled with the decision about the helmet too. Her insurance covered 80%. He adjusted to the helmet without any difficulties and wore it all the time -- even when sleeping! It only came off at bath time. It was re-fitted every 2 weeks (and she drove 120 miles round trip to the PT center). One of her biggest fears was that people would stare at him. What actually happened was that he was ignored!!! So she used stickers to decorate the helmet (Christmas, Valentines, St. Patrick's Day) and that changed the situation dramatically. She also contacted her local newspaper and they did an article on plagio/tort in their Health Section. Since it included lots of photos of this very cute baby, people would recognise them and ask lots of questions. Her only complaint then was that she couldn't go to Target without make up! Nolan will be 2 in December and she is very pleased about her decision. The websites suggested in an earlier note were helpful for her too. Good Luck! B. (RN)

My youngest had torticollis, and to a lesser degree, plagiocephaly. The plagio wasn't severe enough for insurance to pay for a helmet, so we tried to just use repositioning to help her flat spot.

Make sure you go to physical therapy. I was amazed at the difference it made. If left untreated, tort and plagio can have some pretty severe lasting effects. Don't let a doctor brush you off and tell you it's not necessary. It is.

I also joined a couple of yahoo groups for support. They were: http://health.groups.yahoo.com/group/Plagiocephaly/ and http://health.groups.yahoo.com/group/Torticolliskids/ . They were truly a treasure trove of good advice and support. They are both extremely active groups, and there is just a ton of great information.

We started physical therapy with her when she was about three months old, and she graduated from PT at about 13 months old. We'd usually go to therapy once a week in the beginning, and then went to every two weeks because I really had the knack for the stretching exercises.

Please feel free to email me for support. :)

A., My son did that too he constantly laid onthe right side of his head rather than his left. I went so far as to buy one of those things that you put under them and coudl decide which side they lay their head on. Well he would scoot over as far as he could and turn his head to the right. While he does not need a helmet now you can tell that his head is a bit deformed. It is more flat on the right side and if you look at it from the top down it looks like a triangle. He is 5 now and the only way you can tell is if we shave his head. We only do that in the summer and he is not in school in the summer so I am not to worried about it. Besides he is perfectly fine other than a misshapen head (its not extreme tho), and I think it gives him character. I have a 6 week old now who does not have this problem. His head is perfectly shaped axcept for the line of hair in the back thats being worn off from him turning his head so much. LOL

My son who is now 15 months old had torticollis when he was first born. We took him to the doctor and they showed me some exercises to do. 1. chin to shoulder 2. ear to shoulder do this on both sides and hold it for 5 to 10 seconds everytime you chane his diaper. My son hated it and would get so mad (probably becuase it didn't feel to good). So I hated doing it and went to physical therapy and they told me the same thing, to just do those exercises and there wasn't anything else that they would do. So I started doing them again at home. Sometimes I would wait for him to fall asleep and then I would gently turn his head back and fourth. It worked and the torticollis is gone. I think it really helps when they start to hold their head up on their own really good and get more active. Another thing I would do was change his position everytime he went to sleep (right side, on his back, left side) so he never slept on the same part of his head each time. Plus when you lay him on the side that his head is tilted to it helps stretch out the muscle that is causing the torticollis. Don't worry if you do the exercises and switch his sleeping positions around it will go away.

Good luck.

Hi A.,
My son also had this problem and wore a helmet for awhile. He also had "slight" torticollis, but we never had to get any therapy for it just turn his head and make him look the opposite direction if we could. As far as the whole "helmet" issue - I had a difficult time with it, it would never stay in the EXACT spot that it was supposed to, whenever I put it on it would be fine for a few minutes, then it would shift down or up and the guy told me I had to keep taking it off and putting it back on every few minutes. My child did not like that of course, who would!! :) The guy also told me if it wasn't in the correct position, it would start to reshape his head in different spots.. I was like "great" - especially if he slept in it all night, if it wasn't exactly right.. anyways, we ended up giving it up - it was too much . My sons neck is fine, his head as it grew was fine also, you can't even tell he has a flat spot really - he is 2 now. Only I can see slight plagiocephaly, I mean real slight, no one else would ever know. I still have the helmet in the closet.. I feel bad for throwing it away since it was so expensive! lol
Good luck and let me know how its going with the helmet, I would love to hear how you are doing with it!
K.

Hi A.,
Have you considered having a chiropractor look at your child? With all of the pushing & forces on the baby during birth, birth is quite an agressive experience on a child's neck and spine. Its not uncommon for babies to have strained muscles that pull their spine in incorrect directions. Spine problems cause discomfort and can affect digestion & breathing. I will deliver our first child this winter and I plan to have our chiropractor check our little girl over for muscle & spine strains. Its my understanding that young infants usually respond positively and quickly (just a few treatments). Blue Mountain Chiropractic in Meridian works with a lot of pregnant women and newborns/infants. Good luck!

I am not dealing with the same condition but my son in now 16 months and we have physical therapy once a week for other reasons. I watch everything that she does and have learned many things to do and try that you just can't get from online. I would encourage you to take him at least the bare minimum for the knowledge you can gain. I also began taking my son to the Chiropractor when he was a newborn. This was my first experience with Chiropractors. Wow. It is another therapy you can ad to his PT and see wonderful, non evasive, gentle results. Another therapy to looking is neurolink. Go to neurolinkglobal.com and read about it. We have taken our little one for three session and have seen awesome results. He had an acute attack of encephalomyelitis and as a result lost all motor control. He was slowly recovering before that and after his first session with the neurolink practitioner his recovery increased from once a week to daily. Its not everones cup of tea but we are grateful that someone recommended it to us.

Best Wishes to you and your little one

A.

Hi A.,

My daugther also was diagnosed with this at 4 months. With the help of physical therapy and our efforts at home she didn't have to wear a helmet(I think they do look very cute in one though). I just wanted to reassure you that it will resolve itself with work. My daugther is 2 now and you would never know. Best of luck to you and your son!

R.

Just yesterday we saw a specialist for this very thing. My son is 3 months and I noticed asymmetry at about 3 weeks of age. Luckily we now know it's purely positional and that we can do a lot of things to correct the problem. The specialist we saw told us that since our son's problem is so minor that a helmet isn't necessary, and suggested we simply do the at-home physical therapy.

We were also told that if a helmet is needed, it would need to be placed by 7 months. I'm wondering if you were told anything like that? So maybe you can try the physical therapy and try to fix the problem without a helmet, and then in a couple of months you/your healthcare provider would know if the helmet was really necessary.

We were given a great handout with positioning ideas. I assume you were given these as well but if not feel free to email me and I'll send you what I know.

Good luck, P.

I don't know of any mother's dealing with this but I want to let you know that I recognize what a difficult thing this must be. I have read about such babies and think that they were able to eventually have an easier time.

I would like to empasize the importance of following thru with medical advice including physical therapy. Take him for physical therapy and ask if they will teach you how to do it at home. Seeing it on the internet is not sufficient for doing it yourself. Those exercises are based on a whole lot of information that you do not know. If they are not done correctly they can at the least not be helpful and at the worst cause more damage.

I'm glad to read that you are enjoying your baby. He is so precious.

Hi A.,

My daughter was diagnosed with Tort when she was 2 months old. Her pedi showed us the stretches to do with her at every diaper change. She, like all the other babies, hated them. When she was 3 months we noticed a little bit of asymmetry beginning, so we started PT. The therapist showed us the same stretches plus a couple more to help control the tightening in her trunk (she was starting to curve her back, too). She had mild plagio which resulted in some mild frontal bossing (her forehead bulged out a little). We were able to fix the plagio and bossing without a helmet. We just propped the side of her mattress up and really encouraged her to sleep on the other side of her head. We also layed her in her crib so that she would have to turn her head the way she didn't want to in order to see out into the room or see her toys.

The PT helped a ton. We only go every couple of weeks and do the bulk of it at home. She is now 6.5 months and doesn't have any remaining tightness. We are now working on strengthing her neck muscles on the other side, which PT is also very helpful for. Her physical therapist has fitted her with a TOT collar (http://symmetric-designs.com/tot-collar-.html) and we hope to have her all straightened out in the next few weeks.

Sorry to go on for so long, but I know how emotional it can be. Even though tort/plagio is mild compared to what several children face, I was in tears over it at times. Give your son's helmet some personality and it will be darling! People notice my daughters collar, but I've never had anyone stare or be rude. Most just ask questions and are really nice about it.

As one final note, I would definitely recommend PT. We hesitated with that decision, too, but I'm so glad we have gone, even if it's just to have someone verify to us that we're doing things right and she is getting better.

Best of luck!